Surviving Cancer: Tom’s Story – His way
It has been several years, since I was diagnosed with prostate cancer. Radical surgery was used to remove my cancer by an incredible team from the Mater Hospital, Dublin, Ireland. With care-giver and home support, I beat it. When people ask how I am, to this very day, I am inclined to say, ‘Alive! 😊’.
Post-cancer treatment, in my case, was truly difficult, posing many challenges over a long period to recovery. Unless you’ve been there, you will not fully understand. Perhaps these highlights of some of the post-cancer difficulties will give a sense of insight. They included both physical and mental exhaustion, unbearable constant fatigue, and, indeed, personal finances strain. I was still recovering from the Irish bank collapse; it destroyed my start-up company. We launched the product to the Irish home market the very month the banking system collapsed. Easily three years of my life poured into a software company bringing ideas to life, risk taking with no salary for two years, paying staff, and the never-ending bills. Life savings gone; the strain was already there. On reflection, I believe the strain of the undertaking, the collapse of the company, and the natural uncertainty of what will happen given that we were not in a good financial shape contributed largely to the emergence of my cancer. Against this background, I beat my cancer.
Roll on a few years and, the cancer was back for another shot at taking my life.
Cancer relapse: a battle with body and mind
This time the cancer affected my lymph node system. Clinical treatment was a combination of hormone injections and the highest dosage of radiation that could be applied over a thirteen week spell, if I remember correctly. Both the Mater Hospital and St. Luke’s, Beaumont Hospital, Dublin, where I received my radiation treatment, worked as a team to treat me. Second time around getting through the post-cancer treatment stage was utterly brutal, to put it mildly. For months on end, the side effects of fatigue, both physical and mental, were totally potent, emotions in cruel disorder, frustrations at not being able to do simple things that are taken for granted just bubbled up inside and were soul destroying. My loss of memory also drove me distracted, and there were other side effects, but you get the general picture.
People around me sympathised and were caring. I will always be grateful. Through sheer determination, many unbelievable inner-mind battles centred on my denial that I was ill and with that inner-drive to achieve things that I have and applied inwardly for a fast recovery, helped me to come through the right door, so to speak. It took the best part of a year to recover and a lot of inner pain endured along the way. Undoubtedly, care-giver support, family and friends, enabled me to gradually leave those dark days behind. Thankfully I recovered. Energy levels will never be what they were before the cancer got a hold of me. Nonetheless, today I candidly say ‘I am Alive! 😊’. I try to help those I come in contact with; getting on with life’s ups and downs, aiming to achieve, learning to live with mistakes too and accepting life for what it is.
Cancer Survivorship and Awareness
Blessed as a survivor, I met wonderful people who at the time were struggling with their cancer. Many battled bravely. Sadly, some are no longer with us in person but in spirit. Our collective and individual battles took my engagement and reach out undertakings to a different level.
Initially, I started by running a coaster campaign, which given my bodily semi-naked stance, let’s say, attracted eyes and a few giggles or more😊. Still does!!
Fig.1: Coaster Campaign for men to get their PSA blood levels checked
If you turn the coaster over, it states “Lads, get your PSA blood levels checked! “ or ‘‘Lads, get your PSA levels checked. Stay prostate cancer free!’
PSA (Prostate Specific Antigen) often rises as one gets older. Details on PSA ranges can be obtained here. The coasters were distributed across many counties of Ireland – hotels, bars, restaurants, sports club, etc. Later on, on my travels across Europe, sought by friends and colleagues. Later, I ran a poster campaign on prostate cancer to help build awareness on the need for men to get their PSA blood levels checked more regularly. I use this blog, to encourage male readers to do just that! Some friends rang me up to say that they got their PSA blood levels checked. A very close colleague was shocked, yet ever so pleased, as his GP read his blood analysis and his cancer was caught early and in time! We often meet and laugh at what might have been. 😊 Stupid, if you think about it.
I will always be grateful to my dear friend Stephen Purcell in particular, who was amazing and so supportive. Always grateful for his kindness and understanding! The printed posters were placed on canteen walls, doctor surgeries, and other places. They become part of the campaign for men to more regularly get your blood PSA tested. In particular, the campaign went to build awareness and extending the outreach. It was a start. Surely, more was needed. Nonetheless, it had to be done differently and on a wider scale if there was a chance at making a real impact.
My company, TFC Research and Innovation Limited, having been involved in EU scientific research, was well positioned to further the quest to help others or my journey, if you prefer, to within the post-cancer treatment space. Although struggling a lot with the effects of the post-cancer treatment, I approached TSSG, now the Walton Institute (Waterford, Ireland), about preparing a Horizon 2020 proposal centred on cancer survivorship. With the support of UNINOVA (Portugal), and Universidad Politécnica de Madrid (Spain), we prepared a Horizon 2020 proposal, which was submitted for the Call Topic “Digital Transformation in Health and Care”. Months later, we received notification that the consortium won with the project – FAITH!
Cancer Survivorship Support: FAITH project and CS_AIW Cluster
Beginning in January 2020, FAITH is a European Commission-supported research project aimed at providing an AI application that remotely identifies depression markers. Specifically, it would do this by using Federated Machine Learning, supporting people that have undergone cancer treatment. FAITH was so right for cancer survivors. Within the first year of the project, I began to look outside of the box, so to speak.
There are other EU support research projects in the cancer survivorship space, albeit tackling different cancer types. In fact, they involve emerging smart technology, nutritional and holistic approaches, as well as clinical trials. So, why not share common experiences, understanding, knowledge and different perspectives as a collective group for the wider good of those involved in the post-cancer survivorship chain and likewise, for the benefit of our individual projects. Thus, the ‘Cancer Survivorship – AI for Well Being’ Cluster, was formed in October 2020 during the pandemic. Over time, the Cluster grew; it was gradually built up working through an excellent work ethic and ethos. “We don’t work in silo!” became our motto, and the Cluster became an entity of collaborators, comprising twelve EU-funded projects.
As a collective group, the Cluster has achieved a lot. The multiple cluster activities, including the ‘Meeting of Minds’ (MoM) workshops were activated. The Meeting of Minds transformed from a once-off meeting to bring patient groups and doctors together, into a series of events focusing on knowledge and practices exchange between the members. Moreover, it also included active engagement from end-users and stakeholders. The Cluster uses these MoM events as a opportunity to showcase results and listen to the relevant stakeholders (e.g., patients and survivors, policymakers) to obtain feedback on the methodology, concepts, and practices that are being implemented through their solutions. The range of cancer types and focus cancer areas for the applied patient-centric smart technology across the projects within the Cluster is highlighted in the following illustration:
Fig.2: Cluster project Cancer and focus area coverage
A dedicated cluster website (www.cs-aiw.eu) is also in operation, as the Cluster’s LinkedIn page on social media. You are welcome to join us!
The Cluster started with a group of three projects (i.e., FAITH, MENHIR and ONCORELIEF) working on AI-based solutions for Cancer Care and cancer survivors’ well-being. Then, it expanded over time to eleven member projects. These EU-funded projects have at least two things in common. Firstly, they address the issues of mental health, well-being, depression, and/or patient support in cancer survivors. Secondly, they adopt a participatory research vision. Recently, the RELEVIUM project joined the Cluster, having a focus on pancreatic cancer patients.
Many collaborative activities within the Cluster were undertaken since its’ formation in 2020. Without an incredible membership team and brilliant experts, too numerous to mention individually, but too important not to acknowledge either, we would never be as strong or achieved so much.
Cancer Survivorship and AI for Well-Being
Notable in 2023, were the solid exchanges between the projects, the sharing of experiences and issues regarding clinical trials, which were held at the Madrid plenary meeting, May 2023, hosted by the Universidad Politécnica de Madrid (Spain). Projects including LIFECHAMPS, ASCAPE, BD4QoL, CAPABLE and FAITH presented their individual methodological approaches, as well as issues that they individually faced during the undertaking. The cross-fertilisation exchanges and advise given between the collaborating projects was very fruitful. In fact, it helped with the undertaking with the projects on a collective and individual basis.
Also, the launch of the CS_AIW White Paper, in 2023 on the work of the Cluster since its formation was very significant. Presently, the paper is being advanced given the longer duration of the clinical trials. With more robust data, our findings and recommendations will be more solid. The undertaking was led by MENHIR, who are being greatly supported by BD4QoL, in particular.
A third highlight was the remote Meeting of Minds (MoM) webinar from a Business Angel perspective on EU project outcomes. This was jointly-driven by Zoltán Székely (Hungary) and Shemas Eivers (Ireland). Held in December 2022, the webinar was truly engrossing and gave an insight to how Business Angels see propositions and what they are looking for in their decision-making process to invest or not. The remote event was quite open and candid. It gave the participants from the Cluster much insight. It was led by FAITH.
Cancer Survivorship Cluster: ongoing and upcoming
Presently, the Cluster is evolving for the intended wider good of post-cancer treatment patients, clinical, care-giver support teams and researchers. Implementation of the plans for 2024 are progressing, including the appliance of the Better Practice Guide Initiative that originated in the NO-FEAR project. The development of the Cluster’s Better Practice Guide is being driven by the LIFECHAMPS project. The undertaking commenced in 2022, and has been quite challenging given the subject matter and engagement of all projects. The outcome will be very important for software development in the area of post-cancer treatment patients. Another activity is being led by CAPABLE, where the focus is centred on market readiness and common issues facing research projects in the cancer survivorship space. These are just some of the present ongoing cluster activities.
Underlining all of this, is the cluster’s collaborative aim to try to help patients, clinicians and care-givers in the post-cancer survivorship space and beyond. Indeed, this objective actively supports the European Cancer Mission. The European Cancer Mission’s goal is to improve the lives of more than 3 million people by 2030 through prevention, cure and for those affected by cancer including their families, to live longer and better.
If you care to join the Cluster, please visit our website, and thereafter best to contact us by email in the short term ‘contact@tfcengage.com‘. Follow ups can begin thereafter.
Wrapping up this blog, I know my cancer will be back. Hopefully, some results from the cluster will be in the market by then.
“I am Alive!😊”. Every day is gift.
Thank you for reading!
Author: Tom Flynn (TFC Research and Innovation Limited)
